There was a great panel talk by @poconnor about living with PKU and sapropterin.
One of the questions was "are you doing well with phe levels", and one of the points was that how life changes do have a severe impact on phe levels.
As someone who moved house quite recently AND had a job change, I am proof that big life changes as well as changes to routine absolutely do mess up phe levels.
I really loved watching this presentation given by our very own @pcublogue! It's about his experiences with PKU. Goes to show no matter the language/nationality/culture difference, there are some things we all share the same, and @pcublogue put it brilliantly! Well worth a watch:
Made myself some low protein burgers using the Promin burger/bun mixture. They both tasted great! I think it would be better with a leaf of lettuce, some tomatoes, and some vegan cheese though...
My last blood test results came back at 570 umol/L!
The one before was 801 umol/L, so it’s nice to see such a drastic difference. It came down to a spice I regularly used having quite a significant amount of protein! Once that got cut out, my levels went down.
Our very own @poconnor has written a new update to her newsletter!
All about the ESPKU including the best panel ever held*, and some details about brain injury. Not only that, but it closes on a final thought which-my word, I really needed that about now, so thank you Pauline!
You can read it here (and maybe subscribe, would you?)